I wept during my weekly chapter Centersphere zoom meeting yesterday. I was sad for sure, yet when it was my turn to share about LGF and what we need or who would be a good referral I was overcome with the day's happenings that I had been enduring behind the scenes in addition to sharing about another child lost to SIOD.
Like the Chumbawamba song, "I get knocked down, but I get up again! You are never gonna keep me down." I allowed myself time to decompress overnight and this morning I got up again with renewed spirit and energy as I typically do throughout this medical journey we are on with our Emily.
For those who aren't aware, or perhaps don't know, I have become the type of woman who goes after it and figures it out along the way later. It may not be the best advice from your latest life coach, but it has served me quite well, especially over the past decade in my 40's on multiple occasions. Much like the time where I decided to push myself further into running and my mental game and signed up for my first half marathon a few years ago. This is the shirt I wore to train in on my long run days and for the day of the big event. Why? Wearing it wrapped me in the embrace of energy of these children and their families. I ran all 13.1 miles. This was NOT easy for me even with nearly 5 months of training. I really don't even like running. I enjoy working out and health and fitness, but running wears on my, I'm rather slow, and it can be hard on my body and lungs ( I have asthma). But- we were asking our daughter, Emily to push herself through grueling therapies after her hip reconstruction surgery and she became my biggest cheerleader and coach during this time. She is always my inspiration and I added these children to help keep me going as well. Most of the children are one's we "met" through our transplant, cancer, rare disease, or SIOD medical experiences. Some children are of prior friends we had who tragically lost their children for various reasons. I went to my closet last night to look at my shirt and realized that not only more children's lives have been lost that need to be edited and added and we have also virtually met more families of SIOD. I also realized I need another shirt! I have run out of room. It isn't right. It isn't fair. I am particularly impacted by our SIOD children and their families since this is what Emily has and as we strive to be a beacon of hope for all through Emily's miraculous journey thus far, I get so emotionally invested in EACH and EVERY single family we are blessed to come into paths with. My heart hurts and I get sick to my stomach EACH and EVERY time another child succumbs to SIOD, like poor little Brunette, age 3 of France who is being laid to rest today.
I weep for each child upon diagnosis, complication and death. I question if what I am doing, have been doing and have planned can be or ever will be enough? Let me be clear, in my heart of hearts, I know without a doubt I am doing all I can and I know this, yet it doesn't ever seem to be fast enough to help save these children. I am a very optimistic, idealistic type of gal as well and let me shout this loud for those in the back to hear: I HAVE A VSION BEYOND OUR RESOURCES FOR LGF!!!! Once more: I HAVE A VISION BEYOND OUR CURRENT RESOURCES FOR LGF!
Please listen and hear me when I say that I BELIEVE we will raise the funding needed for SIOD research, we will continue to the beacon for families past, present and future, and we will gather the resources we desperately need to see our vision through! How you ask? I of course have a plan, a road map, but it will be done, it has to be done, but NOT without YOUR continued support and help. If you want to know specifics and join in our fight please continue to follow our journey, reach out and let us know because TOGETHER WE CAN DO SOMETHING EXTRAORDINARY!
Behind the scenes I was caught up in our current Governor's state decision to take people with disabilities off of the COVID19 vaccine list. I am not wanting to nor will I debate about politics, and this pandemic, but if you are so inclined and would like to sign this petition if you are a Nebraska resident, we would appreciate it on behalf of our Emily and other other children and people with compromised immune systems:
http://www.arc-nebraska.org/prioritize_disability_vaccine_access?recruiter_id=5794
Thank you! Feel free to share as well.
Believe-
Warrior SIOD mama on a mission with vision!
